Understanding Primary Polycythemia
28 years old, male, former smoker, generally in good health. It all began in January when a standard blood test revealed that my hemoglobin (HGB) level was 17.2 and my hematocrit (HCT) was 51. Following this, I was referred to a hematologist who requested an erythropoietin (EPO) test and a complete myeloproliferative neoplasm (MPN) panel. The results showed EPO at 6.33, and the MPN panel did not indicate any positive findings. I was advised to undergo a single unit of therapeutic phlebotomy and return in six months for a follow-up. Fast forward to today, I received my complete blood count (CBC) results: RBC at 5.6, HCT at 56, and HGB at 16.5. I am extremely anxious, as I worry this could signify primary polycythemia. It’s worth noting that I do not reside in a high-altitude area, and despite having a history of smoking—currently limited to 1-2 cigarettes daily—I have not noticed any other symptoms related to this condition. I’m starting to lose hope and feel increasingly convinced that I may have primary polycythemia vera (PV). Can anyone with more experience in this area provide insights or clarity?
Answers (1)
6/26/2025, 6:20:50 PM
OpenHealth AI
It's understandable to feel anxious about your blood test results, especially when something as complex as polycythemia is involved. Let's clarify what you've shared and outline some next steps.
Summary of Main Points:
- Your tests show elevated hemoglobin and hematocrit levels.
- Erythropoietin (EPO) is low, and no concerning findings were noted in your MPN panel.
- You are scheduled for follow-up after therapeutic phlebotomy, but your recent CBC results are prompting worries about primary polycythemia vera (PV).
Explanation:
Primary polycythemia vera (PV) is a type of blood cancer that causes your body to make too many red blood cells, leading to thickened blood and increased risks for complications. However, not all elevated blood counts indicate PV, especially when your EPO levels are low and your MPN results are negative.
In fact, the decision to treat with therapeutic phlebotomy suggests that your healthcare team is proactively managing your elevated blood counts even without a definitive diagnosis of PV. Many individuals with mildly elevated blood counts can maintain good health with careful monitoring and management.
Specific Next Steps:
-
Monitor Symptoms: Keep a close watch for any new symptoms, such as headaches, dizziness, blurred vision, or unusual bleeding. If any significant changes occur, note them.
-
Hydration: Ensure you stay well-hydrated as it can help maintain good blood viscosity. Aim for at least 8-10 glasses of water daily, depending on your overall health and activity levels.
-
Therapeutic Phlebotomy: Continue following up with your hematologist regarding the phlebotomy sessions. These sessions help reduce red blood cells and lower your risk of complications.
-
Follow-Up: Attend your scheduled follow-up in six months to reassess your blood counts. This check-in will be crucial for adjusting your management plan as needed.
-
Reduce Smoking: Consider reducing or quitting smoking altogether, as this can impact your overall health and blood conditions. Many resources and support systems are available to assist with this journey.
-
Ask Questions: If you have concerns about your diagnosis or treatment plan, don’t hesitate to reach out to your hematologist for clarity on how they view your condition and the plan moving forward. Being an active participant in your health care can empower you and reduce anxiety.
Remember, you're not alone in this process. It's completely normal to feel anxious, but with appropriate management and communication with your healthcare providers, many people with elevated blood counts can lead healthy lifestyles. Please reach out anytime you need more information or support!
Related Questions
Strange Jelly-Like Substance Observed from Wound
I’m a 21-year-old female living with an auto-inflammatory condition known as hidradenitis suppurativa (HS). Recently, I've experienced a concerning issue with one of my wounds. This particular wound causes significant pain and excessive bleeding. However, whenever I attend to it, I tend to find this unusual jelly-like substance present within it. Interestingly, this phenomenon has only occurred with this one wound and not any of the others I have. The bleeding seems to persist until I manage to remove this jelly substance, after which it typically slows down and comes to a halt completely. I’m seeking insights into what this might signify so that I can effectively discuss it with my healthcare provider.
Battling Chronic Nausea and Vomiting for Over Two Years
For the past two years, I (age 26, female) have been enduring an incredibly challenging health situation. I experience intense nausea daily and find myself vomiting numerous times, with almost nothing providing relief. To provide some background, I’m from West Texas and I currently weigh around 190 pounds, standing at 5’7”. Initially, my weight was about 211 pounds when these symptoms began, and it fluctuates frequently between 190 and 225 pounds. I engage in vaping and consume THC. Previously diagnosed with hypothyroidism, my condition seemingly resolved, according to my healthcare providers. Additionally, I have polycystic ovarian syndrome (PCOS). I have consistently faced irregular bowel movements, with stools that are loose and sometimes appear to have mucus. Compounding my struggles, I've also suffered from migraines. I have had an IUD for over five years, experiencing two insertions of the Kyleena device. In December 2022, my battle with health took a severe turn when I was diagnosed with stage 4 Hodgkin’s Lymphoma, requiring chemotherapy treatment, specifically AVBD (Apologies for not recalling the exact medication names). By July 2023, I had fortunately achieved remission. However, after reaching remission, my vomiting worsened, transforming from primarily white foam to a mixture of 80% bile, any food I attempt to consume, and still white foam. This intense vomiting, accompanied by significant pain in my upper back, escalated to more than eight episodes daily by November 2023. At that time, THC seemed to be the only avenue for me to retain any food. During this tumultuous period, I consulted various doctors who, after confirming I wasn’t pregnant, attributed my symptoms to Cannabinoid Hyperemesis Syndrome (CHS). Immediately, I ceased THC consumption for over six months, yet the vomiting continued unabated. Each time, doctors would prescribe ondansetron, regardless of my claims that it provided no relief. I experimented with various diets recommended by medical professionals, but there were no improvements in my condition. Eventually, I obtained a referral to a gastroenterologist who intended to perform an endoscopy. However, the procedure was prohibitively expensive even with insurance, and thus was never conducted. This doctor also ordered blood tests to rule out several gastrointestinal disorders, such as Crohn's disease, Irritable Bowel Syndrome (IBS), and gluten sensitivity, but all results came back normal. Afterward, I had another appointment with a different gastroenterologist, but the doctor failed to meet with me. Instead, a nurse informed me that the doctor had merely recommended promethazine without conducting any tests or scheduling further visits. When I mentioned the possibility of gallbladder issues, the doctor laughed dismissively at my suggestion. Discussing my situation with my oncologist, he suggested that my heightened sensitivity to food odors stemmed from my chemotherapy experiences while I was working in fast food. While food smells indeed affect me, I'm primarily triggered by medical scents such as rubbing alcohol and cleaning agents. This ongoing ordeal has been overwhelmingly distressing. I now experience episodes of vomiting accompanied by bright red blood, presumably due to a throat tear. When I first encountered this troubling symptom, I consulted a doctor who appeared unfazed and prescribed a promethazine suppository, which does help but makes me extremely drowsy. My nausea persists nearly around the clock, often feeling as if there’s a heaviness in the upper part of my abdomen. I frequent urgent care facilities when my symptoms intensify, only to be met with minimal assistance since this is a chronic issue. Currently, I lack a primary care physician. Whenever I sought one, I encountered skepticism regarding my condition, with some healthcare professionals implying that I was exaggerating my symptoms. Though many physicians who do take my situation seriously seem baffled, I've lost count of the diverse medical experts I've consulted about these ongoing issues. If anyone has insight or suggestions, I would genuinely appreciate it. I can share my latest bloodwork results if that would be helpful—just let me know!
Understanding Tuberculosis Exposure Risk
A 26-year-old male, who neither drinks alcohol nor smokes, seeks to understand the implications of exposure to tuberculosis (TB). As an anesthesia technician, I became concerned after I encountered a TB-positive patient about a month ago. I had to enter the patient’s room several times to perform blood gas tests. On my first entry, I mistakenly wore my N95 mask incorrectly due to the hectic nature of attending to multiple rooms. From my research, it appears that TB is quite transmissible; direct exposure can pose a serious risk of infection. Transmission usually requires prolonged contact with an infected individual, particularly in a close or face-to-face setting. In this case, the patient was lying face down and appeared to be sleeping when I entered. I have already undergone testing for TB, but I am eager to deepen my understanding of the risks involved in these situations.
24M | Unexplained Fainting Incident
**Note:** I previously shared this story, but it was inexplicably removed. I’m a 24-year-old male without any medical diagnosis or prescription medications. While I do consume alcohol occasionally, I hadn’t been drinking before this happened. Around 3 a.m., I got up from bed to use the restroom. As soon as I began to urinate, I suddenly felt a wave of dizziness. The next moment I was aware of was regaining consciousness in the bathtub, startled awake by the sensation of something dripping on me—only to discover it was my own blood. This was my first experience with fainting. When I came to, confusion set in. I was disoriented and couldn’t comprehend why I was being dripped on while in what I thought was my “bed.” Strangely, I also imagined that I was lying on a collection of marbles (which I actually don’t own)—this turned out to be the shattered glass of my shower door lying around me. I’m uncertain whether I lost consciousness first and then fell, or if the fall caused my brief blackout. It took me a few moments to understand why I was in the bathroom at all. I’m not sure how long I was out; I only remember it was around 3 in the morning when I initially got up, and about the same time when I regained consciousness. I dialed 911, and the ambulance arrived promptly. They checked my vitals, performed an EKG and measured my blood sugar, finding nothing unusual. At the emergency room, they repeated the vital checks, conducted a CT scan, drew blood, and took x-rays—yet still no abnormalities were detected. I had several cuts on my face and left arm (curiously, this is the arm that would have been turned away from the door), along with bruising around my ribs. Since the incident, I’ve been suffering from headaches and pain in my ribs. I received stitches on both my face and arm. The nurse suggested I could have stronger pain relief, but I opted for just Toradol. They eventually discharged me, stating, "We’re unsure what caused this, but return if it happens again." What might have triggered such an incident? How can I safeguard against it reoccurring if they remain uncertain about the cause?
Swelling Beneath My Chin Near the Jawline
18-Year-Old Male: I'm reaching out to any medical professionals who might provide insights into my situation. I've been using marijuana since I was 14, but now, at 17, I'm making an effort to stop and have been clean for 18 days. Recently, I've discovered an unusual swelling located just beneath my chin, behind my jaw. It causes some discomfort when I move, yet it doesn’t feel painful continuously. I'm somewhat anxious that this could be indicative of a more serious issue, especially considering it's positioned near my chin's lymph nodes. Any advice or information would be greatly appreciated as it might help alleviate my worry.